PSP Association
5,300 members7,299 posts

Hospice Care

Hi Dorothy,

I found our hospice help invaluable when I was looking after my sister. She attended the day centre one day each week which gave me a much needed break. Also she has two ten day respite breaks in the in patient centre. The care was wonderful on every level, from the physical, emotional and medical. They were a great support to me and listened when I needed to talk and unburden my fears, worries etc. When I was looking after her at home I knew that I had that back up should there be a problem with the Hospice at Home team who would come out 24/7 at any time night or day. You do not know how reassuring that was because if there is a problem it is always at the weekend when you have not got access to your local surgery. If you can access their help - go for it. They are wonderful and I am truly grateful for their help. Hope this helps


4 Replies

Hi Maeve

Thank you, this sounds encouraging. I have already been in contact with the Home Team at our hospice but it seems I have to have a referral via the GP and I am seeing her next week.

By the way, where do you live? I am interested because it does seem to me that levels of care vary around the country.

regards and thank you again.



Hospice was amazing in my dads life and I could not have asked for better help in caring for him. 24/7 no matter what time, they came and we live on a farm. Always gentle, kind and loving. I could not have made it without them. We had someone here everyday without question. In my dads final hours, his primary nurse sat with me in my dads room all night long and talked to me, gave loving touch to my dad and never left his side and after he passed away, she went to my younger children and told them of their grandpas passing and answered their questions in the most loving way. I will always be grateful to them for the blessed care they gave not just my dad but our whole family.


Just when mum was in her last 2 weeks and I was feeling desperately worried and low and grief was consuming me the palliative nurse from our local hospice came on the recommend of the Parkinson's nurse. She arranged for mum to go onto all liquid medication and pain relief patches (for her stiff and aching limbs). She sat and talked and listened to me for early 2 hours and I felt truly uplifted afterwards and it helped me to cope with those last few weeks.She gave expert advice to the nursing staff at the home and mum's last days were peaceful and comfortable. What more could you ask?


Has anyone had rigors as part of this disease


You may also like...